Sunday, January 15, 2017

"Hi, I am looking for info on weaning from flonase. I stopped it abruptly and quickly discovered that was a bad idea. I find very little info on nasal sprays, a lot of it is contradicting as well. Most doctors say that nasal sprays don't need to be tapered but I have steroid withdrawal symptoms. Any input would be great :) thank you." 1. Doctors don't believe anything can suppress the HPA axis beyond 10 days of high dose steroids. Unfortunately, bodies do not give one shit about science. You can make eyes read the textbooks and brains memorize the 'facts'...but you can't make the body perform to the scientific standards. It doesn't work that way. Bodies are post-truth. My body has defied science when it comes to HPA axis suppression. Any body can. Doctors need to do a better job of understanding how much variation there can be at the intersection of science and the human body...particularly in the realm of the HPA axis.2. What I would do, if you think you're going through withdrawal, is taper your Flonase. Try skipping one dose on alternating days.So if you were using 1 spray 2x a day, drop one of those...try taking one dose in the middle of the day (to help it get out of your system by nightfall to help your HPA axis reboot and to avoid taking it during the am hours when cortisol production peaks). The next day take the full dose and 'rock' back and forth until you no longer feel like utter shit from the missing dose. At that point you cut one dose permanently and then alternate dropping the remaining dose.If at any time you feel horrible, just go back to taking the initial full dose. Sometimes you have to go back wards to go forward with tapers. Once you feel okay, start tapering again and you'll likely find it goes much better the second time around.So Hi.I'm here.Doing okay.Nothing worth complaining about.Except for this raging tooth infection trying to cross my blood brain barrier. OF COURSE there's a bad doctor story behind it. You think it's weird that it always goes down like that for me? Well, so do I! I'd love for it to STOP.Anyway, I had a botched filling last year that left me in a lot of pain. I went back once or twice and they were unable to fix it. They couldn't figure out the problem (code for: We fucked your teeth and don't want to own it) and suggested I might need a root canal...for a tooth that never bothered me until they touched it.So I've lived with it for over a year because the other thing they said was the nerve might need six months or so to calm down.Which didn't happen.I just stopped chewing on that side of my mouth.

But then that started fucking with my jaw so I had to chew over there and suck it up.And now I have an infection.On the weekend.Which always makes these things so much more fun. (There are ZERO emergency dentists in my area by the way.)My tongue is numb. How about yours?Lucky(?) for me I have antibiotics on hand and they seem to be kicking in. I don't have chills anymore and mostly don't feel like I'm choking to death. I have a (new) dentist appointment tomorrow where we'll have to sort out whether I need a stronger antibiotic or not. And how many root canals this is going to take to fix as it's more than one tooth now.Meanwhile Reddit is feeling super sorry for medical professionals who have to deal with abusive and nasty patients.Snort. Yeah. Right.
I'm gonnna file that one under 'lies people tell themselves' and 'things people project onto others to deflect from their own shortcomings, see also: gaslighting.'

On the writing front...eh. Last year sucked. It would help if I would write to market, but I've decided to write some off-the-wall shit that sells at a slower rate instead because GENIUS...I am not. And my current novel is due next month for a group project and well, I killed the hero. My heroine is actually sort of relieved as she wants nothing to do with him. So that is not going so well.

I was accepted to a kinda, sorta prestigious competitive writing workshop. They even checked my references and writing samples. Perhaps I'll get somewhere someday.

Wednesday, September 7, 2016

Man, that random asthma attack I mentioned in the previous post was a bad one. Despite 40mg of prednisone, I fought it hard all day. I needed to be in bed doing nothing, but that's not how my life works right now. Instead I spent the day dealing with various weirdo relatives at my weirdo parent's house, which kept my lungs pretty irritated.

The curse I live with is having very strong boundaries and a low tolerance for dysfunction. Guess what my family is full of? Toxic, co-dependent people with various psych diagnoses and a penchant for misogyny, racism and homophobia.

It's really A LOT easier to be crazy. The crazy people are oblivious.

So I couldn't breathe and I was surrounded by whackadoos who allegedly had the same DNA as me, but somehow mine didn't express its full potential for crazy...leaving me and hubby (the crazy in his family skipped him too) the odd ones out.

Oh and the guests of honor were three hours late. What was supposed to be a short visit turned into a marathon day with family...increasingly irritated and grumpy family. With my lungs in the shape they were, I had no choice but to be Zen about everything.

They're an hour late? Okay.

Two hours late? Sure.

Go to the grocery store and get appetizers so we don't starve even though I can't really breathe well enough to walk and everyone else can*? Whatever. I'm down.

You're going to scream at each other about tortilla chips? Cool. I'm just going to sit here and drink my lemonade.

Go to the grocery store again for more food because they're still not here and the lunch we were going to have is now on track to be an early dinner? Well, I'll just walk even slower this time, lean on the grocery cart and hope it works out. I've done it before. No biggie.

Somehow I made it through and stayed out of the ER. The universe was definitely making me work for that.

I also stopped the med that was pushing my potassium level so high for a few days, just to be safe. When I did some poking around, I found my dose was kind of high, about double of what other docs prescribe.

I've since negotiated the dose down by half. As it turns out, it was driving my blood pressure way too low and needed to be adjusted anyway. So the breathing issues were compounded by the low blood pressure.

However, for the first time, I seem to have a blood pressure med that works really well for me and it also addresses aspects of PCOS for a one-two punch. Exciting stuff!

Sadly, I researched and initiated the whole thing. It took about a year of maneuvering to get it done because I had to dump my primary doc, find a new one (really hard to do!), and work up the energy to take on the medical world.

Once again, it's not like anyone in the medical-industrial complex was actually putting any effort into improving my health. But I seem to be surviving it okay.

*Yeah. No one in my extended family cares that I can't breathe. We've noticed. Hubby is awesome, but doesn't know how to put together an appetizer menu on the fly. I just try to be grateful that I can somehow pull off grocery shopping in the midst of such a serious attack.

Tuesday, August 30, 2016

The title says it all. Earlier this August I started reverting to an old asthma pattern, one I haven't seen in decades. Namely allergies.

Ever since we went to Florida last fall and my immune system went nuts reacting to all the pollen or whatever in the air, my system has been in overdrive. I've been dealing with an allergy flare for almost a year now. It kicked into overdrive just as the Ragweed bloomed (which was always my biggest problem from my teens into my early 30s).

I have never had allergies so intense. Medication that was always my magic bullet didn't work. I went through $100 worth of over-the-counter meds until I found something effective. I knew if I didn't get it under control, I was going to be in trouble with the asthma so I just threw everything I could find at it. (Thank you Flonase nasal spray!)

So here I am today with really bad random asthma. It yanked me out of sleep this morning and I've been battling it ever since.

BUT my allergies are under control. No sneezing. No itching. Nothing.

No hint of asthma the day before.

Weather is stable as far as I know. (Although hubby just reported it's miserably hot and humid out, perhaps to the level of a heat advisory which is often hard for me to breathe through.)

I am super short of breath, can only walk very slowly, can't pinch the skin on my chest, the albuterol isn't doing enough and I don't know why.

The one thing that's different is my neighbor gave us a bag of hand-me-downs for our exchange student and unfortunately, this neighbor is a super dirty smoker. The clothes REEKED. We tried washing them but it was so bad, we didn't even put them in the dryer, just dumped the wet clothes in the garbage. And then I had to clean the washer because the smoke smell had permeated it.

I am sensitive to that. Second-hand and even third-hand smoke can trigger insta-asthma attacks. But I didn't react at all when it was in my face. If I am reacting to it now, that's a very delayed reaction which is unusual.

Another possibility...my potassium levels are close to going over limit due to a medication we're trying. But would that make my chest asthma tight? I don't know.

I'm going to take 40 mg of prednisone and see how that goes over. If I feel better, it's asthma. If I don't, I might need to go the ER.

Saturday, July 16, 2016

I just wanted to pop in and say I can tell things are better. My energy has increased along with my stamina, the birth control pills aren't as hard on me anymore and I am showing some fitness gains from my workouts for the first time in a year.

Biking is still weird. I've had good rides followed by bad rides with the muscle shredding pain. I think I might really need the B12 shots for that to go well. I don't know. I'll keep experimenting.

Right now I'm focusing on swimming. It's hot, the pools will close before I know it, my kiddo loves it and it's what feels like summer to me. Plus, every time I go swimming, I end up too sore to work out the next day (when I would typically do the bike or do an interval run). By the time I'm not sore, I just want to go swimming again. So mostly I am swimming. I love how much strength my arms and back are developing.

I know better than to get attached to anything, but it feels amazing to be in a body that is growing in strength, where inputs create positive outputs.

Gut's being weird, though and I'm not sure why. I avoided diverticulitis (knock wood it stays that way) and then ended up with a...stomach bug? Weird GI flare??? Too many tomatoes???? I'm not sure, but it knocked me flat on my back for 24 hours--as in I had no choice but to sleep with my puke bowl in between runs to the bathroom, the second I sat down, I passed out unless I had to be sick-- and things have been touchy every since.

I can't say for sure it was the tomatoes, but I know they don't help. Gluten free is easy. Tomato free is not. I have moments of weakness and do stupid things like eat marinara or salsa or other nightshade no-nos. Usually I do okay, with minor discomfort, but it's all variable. What I can get away with one day, flattens me the next.

Thursday, June 23, 2016

TSH continues to climb, unfortunately. I don't know how long it will take to finally cross the line into official hypothyroidism or if there's any hope of it reversing itself. Time will tell.

My ferritin is finally in range! Woot! I brought that sucker up from a 4!!!! Hemoglobin dropped though for a second time. Other values are low still as well. I am assuming it will improve as the ferritin continues to improve.

AND my husband says I got faster on the bike. That's the first I've heard that in over a year!

So maybe I'm turning this shit train around!

Except my gut is trying to have diverticulitis again. (What? You thought I was going to suddenly be healthy or something? Send me some of what you're smoking!)

They say avoiding certain foods is an old wive's tale BUT it would appear that popcorn is really a problem for me. I tried it again for the first time in 9 months. It was okay, initially, but on the third try I'm having issues.

And being on iron, even iron that I can tolerate, isn't helping. I'm finding I still have to be careful.

I'm doing my best to head it off at the pass. Wish me luck! I really hate Augmentin.

As for my writing, I left off last time thinking I was going to go out of business. Well, I reviewed my income for the last few months and it's better than I thought. I'm not thriving. Not even close, but I am surviving.

Sadly enough, I'm in the top 10% of authors per a recent earnings survey. Which means most people make nothing.

But I am tired of the stress and drama and constant changes. Not to mention business taxes suck. My husband is up for a big promotion that includes stock options and bonuses and there's a part of me that thinks I'll take a break if that happens.

(Although I am never one to sit and do nothing so I would probably just find some other new thing to do. But there would be a lot less financial stress. Who knows? Maybe I would write books and give them all away just to avoid taxes!)

Thursday, June 16, 2016

So thumbs up on the B12 shots. I just did the second one and there's definitely less razor-blades-slicing-muscle-fibers pain in my legs. And I've doubled my mileage in some of my biking sessions. I'm still slower than a dead turtle, but maybe there's hope.

It's been tough to gauge their effect because I've had issues after each shot. The first one, my husband gave me a horrible cold so there was never any energy boost.

The second one, the puppy kept us up for 2 nights in a row (and puked in our bed at 3am the one night because this is my life) and then the kiddo had one of her prolonged night terrors...so sleep deprivation killed any immediate energy buzz.

Point to the patient though for finding a way to make things better.

I saw a new primary doc who was fine. My blood test results just aren't showing up in my medical record though, which is frustrating. I hope the new primary isn't refusing to release them or something weird like that. (Can they even do that for regular blood work???)

The nurse did call me and say my iron had improved, my cholesterol had improved, fasting glucose was its usual high normal and said nothing about my thyroid (so I assume it was also normal).

But I want to know how much my iron has improved because I've been suffering through the process of getting it back up. I've been doing all the work. I want the payoff of seeing the damn number. And I want to know how normal my thyroid is.

Because it is always the case that I pay more attention than the medical system does. I am the quality check. So give me data, please.

As for the iron...The iron supplements I've found that I can tolerate (in lower than recommended doses, I've never hit the 18mg they said I should take) are a dessicated cow liver pill (that could be filled with anything) and a liquid supplement called Floradix from Europe. I did a month of cow liver and am now on the Floradix which seems to be better regulated than the liver pills.

Again, point to the patient for not giving up and sticking with it to find something that worked.

In other news...

Publishing is going down the tubes for authors. The system serves Amazon's hegemony alone. I suspect I am going to go out of business. And I say this as someone who has built a great marketing coop with an annual advertising budget of $30,000. If the coop can't make a difference, there's not much else that will.

So I need to figure something out. The top earners in publishing are spammers and those few authors that break out in a big way. If I'm going to keep writing, I've got to pick one....and find another job to pay for the marketing.

Sigh. I'm working on a really cool series right now. I'm bummed that unless I come up with five figures in marketing money, it won't even have a chance.

Monday, June 6, 2016

Last night, I went to bed with the beginnings of pink eye (No doubt contracted during puppy training class which was really an hour long pee sprinkler session. An almost 1 year old pup with serious anxiety spent the entire class piddling, dragging her tail through it across the dirty floor and then wagging it all over us).

So I figured I would be in Urgent Care for that sometime today.

Plus our puppy has diarrhea all the time and needs to go to the vet. (She's a lab, labs eat stupid shit and get sick. Mine has been chomping on the toilet for a month now--ya wouldn't think one could chew porcelain but my dog has found a way. The other day, she ate all the dust bunnies before I could get to them with the vacuum.)

But I have no car.

Bonus...I have asthma today due to wheat. A tiny speck of wheat was all it took. I was up using my rescuing inhaler in the middle of the night.

Am I having fun yet? NO! I am not having fun! Glargh.

Thankfully...

My husband is great with cars and quickly fixed the problem on his lunch break.

My wannabe eye infection cleared up on its own which was a huge help.

I knew another family going to the same camp and I caught them before they left their house. They graciously gave us a ride.

The puppy has a Vet appointment tonight. Hopefully they'll do something productive for her. (IME vets don't get arrogant like human doctors, but it's just as difficult to find one who can actually problem solve in a proactive manner. You think this is the first time I've brought the puppy in for diarrhea? Ha. Try third. You must not need medical care too often.)

PPS: For the sake of other lab puppy owners: Labs puke, poop, and pee their way through their first year. It gets better, but you might have to replace all the carpets in your house by the time they get past it. (We did!) Vets are mostly useless when it comes to labs and their sensitive stomachs so here is my advice:

1. Kaopectate is your friend. Google for the dosage.

2. Firm Up is also your friend. This is a dried pumpkin and apple fiber powder you can add to their food to help make stools more solid.

3. Try to keep them from eating stupid shit. This means crate training when you're not around and not leaving them in your yard unattended. They'll still eat something--eating inappropriate things is the breed's raison d'etre--but they won't get as much which means less diarrhea...maybe.

4. Think about a sensitive stomach dog food.

5. Keep doing stool samples at the vet just in case they do pick up an infection/parasite. Labs put so much crap in their mouth, the odds of an infection/parasite are probably higher than other breeds.

6. Keep your dog hydrated. With diarrhea, I stop all dog food and give my labs a mix of rice and broth to keep fluids up. (As they get better, I add in cooked chicken, then start mixing in their dog food and then transition to regular dog food 100%.)

7. Puppy proof your house so they don't get into anything and eat it! If you have kids...God help you. Just accept you'll be pumping the puppy's stomach or paying for surgery to remove intestinal blockages sooner or later. (I have a kiddo so I'm probably doomed! Our puppy has already been gnawing on various toys despite our best efforts.)

Support a Patient

Lost in the Desert

Patient Cliff Notes

I'm categorized as a severe persistent asthmatic* and I have a history of HPA axis suppression due to steroids used to treat the asthma.

Doctors miss the HPA axis suppression every time and actively fight me on it. I've had am cortisols of 1 and 6 and ACTH of less than 5, yet the doctors still can't get on board. The medical myopia and general lack of adrenal knowledge is horrifying.

How did I ever get diagnosed? I took premed classes for 2 years (during a health upswing) and figured it out.

I thought since previous rounds of suppression have been so well documented, I wouldn't have a problem again. I was wrong.

I've been fighting the current round of Secondary Adrenal Insufficiency since March 2010. It has eviscerated my ability to work and to function as a normal human being. Which sucks since I have a toddler who just wants her momma to play with her.

*eh... I bet it'll go back to moderate persistent, once the excitement of last year's hospitalization dies down.

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